What Is HD?

Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure.

Find Help

Locate HDSA Chapters and Affiliates, Support Groups, Social Workers, and Centers of Excellence in your area as well as additional local medical, legal, social, and therapeutic resources for people with HD and their families.

HD Research

Since 1999, the Huntington’s Disease Society of America has committed more than $20 million to fund research, with the goal of finding effective treatments to slow Huntington’s disease. Our research efforts have helped to increase the number of scientists working on HD and have shed light on many of the complex biological mechanisms involved.

Healthcare Professional resources

This section includes online courses for physicians, social workers and therapists who care for people with HD at the local level. Courses deal with cognitive, physical, therapeutic, technological and legal HD issues among other topics. This section also includes reference materials in video and PDF format for Social Workers on HD issues listed by varied categories.

GET INVOLVED

When Marjorie Guthrie founded our organization in 1967, her vow was to “do something” about this devastating disease. Today we continue her legacy by bringing together the entire community to provide help and hope to all families affected by Huntington’s disease. Listed here are some of the ways you can get involved in the fight against HD.

Second Annual HD-COPE Meeting

The Huntington’s Disease Coalition for Patient Engagement (HD-COPE) met this week in New York City. HD-COPE unites organizations serving HD families in Europe, Canada, and the USA to help give patients a direct voice in clinical research by facilitating communication between the HD community and pharmaceutical companies working on drugs for HD. Family input is especially important as potential huntingtin-lowering treatments begin the next phase of clinical trials. To learn more about HD-COPE, check out our original press release or this page created by the Huntington Society of Canada.

2019 HDSA Human Biology Project Applications Now Open

The identification of the HD gene led to the development of many animal models that have helped us to better understand the biology of Huntington’s disease. However, in the hunt for effective therapies, the most relevant observations arise from studying human bodies, brains, and cells. In 2013, HDSA launched the Human Biology Project, to help fund projects that focus on research in people. Researchers from graduate students to professors can apply for up to $75,000 a year for 2 years. Their work is evaluated and selected by HDSA’s Scientific Advisory Board, made up of expert HD scientists, neurologists, and family members. This year’s applications are now open, and researchers can submit a letter of intent until May 21st, 2019.

On Monday it was reported that Roche Pharmaceuticals had made a deal to purchase gene therapy company Spark Therapeutics. Our friends at HD Buzz explain why this could be important for the HD community:

“Potentially huge for #HuntingtonsDisease. Roche is testing RG6042/HTTRx, the first drug that lowered huntingtin in humans. Now they’re buying Spark, which has a longstanding interest in “one-shot” gene therapies that could do the same. A logical next step for Roche to develop a complete portfolio of HD treatment options. It follows hot on the heels of uniQure getting IND approval for a gene therapy drug. Missing piece of the jigsaw for a full house of treatment options: oral huntingtin lowering drugs — watch this space.”